Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…

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Sad days = pet pics

I’ve had a really difficult time recently, both physically & mentally.

I’m hugely overwhelmed & struggling to manage my autistic meltdowns without being able to hike anymore. Being stuck inside takes a toll on me mentally, too.

I can get out in my wheelchair a few times a week, but it isn’t the same…all the decent walks are inaccessible, which means I have to stay by/on busy roads (leading to sensory overload & pushing me closer to meltdown); I also really miss the exercise part of hiking, I can’t even self propel. Hiking has been my entire coping mechanism since I was less than 10 years old, so it is a huge loss. They were *the* way I kept myself in check; the way I de-stressed, avoided meltdowns, enjoyed life. It sucks that they’re entirely gone now 😞

Yesterday I had 3 huge meltdowns. It was extremely physically exhausting. I am constantly on the precipice of an autistic meltdown atm as I’m so overwhelmed & have no way to really unwind…it’s very hard being constantly on edge, meltdowns take a lot out of me (& I don’t have much energy because of ME!!), and I feel extreme guilt afterwards for my behaviour during a meltdown.

It’s not nice for me or my partner. Yesterday I was screaming, crying hysterically, I left my wheelchair & collapsed with seizures…afterwards on our way home I had a resulting ME crazy (seizures, freezing cold, too exhausted to speak).

Yesterday was an absolute nightmare.

Life in general is just…difficult these days, too. Dealing with the constant loss & struggle is hell, then you factor in the physical difficulties & pain and it’s just…shit 😂

Take today for example, I couldn’t go up to the bathroom until after midnight due to crippling exhaustion and seizures/being unable to breathe when I moved. Like, that is AWFUL 😭

My exhaustion is extreme, I can’t even sit up without seizing & being so foggy I can’t think/move…on the positive we’ll be getting our stairlift put in within the next few months, hopefully. It will be so nice to be able to go to the toilet when I need to! But I still grieve for the fact that I need a stairlift…it’s such a roller coaster.

Whilst I can’t get out & am so stressed, I’ve been spending a lot of time with my partner & pets. Here are some cute photos of my fur kids!

The piggles got an extension added to their cage today, a 3ft dog crate tacked onto the end. They’re zooming about so happily 😊

Difficult days

I came out of the crash 3 days ago, but obviously I’m ‘overdoing it’ (by that I mean basically doing fuck all 🙄), & running myself into the ground again.

I’ll never learn.

It’s hard. Especially because I know I’m supposed to be keeping my heart rate under 100bpm to give me the best chance of my ME improving, but how am I supposed to do that when sitting down & brushing my teeth puts it at 150bpm?!

My exhaustion & pain are creeping back up. I’m having a really hard time sensory-wise, & have had a lot of meltdowns for me this month (9).

Here’s my April stats:

Today has been one of those days where I’m mourning & full of grief. Those days where you’re really, truly sick of being disabled, y’know?

We all get them, it’s fine to get them, it’s totally normal…but it SUCKS!

God, I miss so much from my ‘old’ life!

I miss when I could shower every day.

I miss when I could get my own drink, run up the stairs, dress myself.

I miss when I could get out into the world EVERY DAY, when I could hike for hours *every day*. I got such joy from hiking, it was so calming & positive for me. I miss it so much!

I miss not having to rely on my wheelchair.

I miss not having to worry about terrain or steps.

I miss being able to walk hand in hand with my partner, sit next to each other on pubic transport, cuddle, talk – without having to yell over my shoulder because I can’t turn my neck easily, or constantly having to repeat things.

I miss being able to walk my dogs, play with my dogs, manage my other pets.

I miss feeling energised & excited at each new day, instead of exhausted and…’stuck’.

I still get out, I know I’m lucky. I have a fantastic partner.

I know I’m lucky.

But I’m still mourning a huge loss. I’m bedbound far more days than I’m not. I’m never symptom free, I’m in pain 24/7, 99% of my time is spent in bed.

I’m still grieving hard.

I’m grateful I can still get out on these short, rare adventures.

I know I can’t do even a tiny fraction of what I could 5yrs ago. I know when I push my body, even by doing such tiny slight things, I’m making my chance of improving slimmer. I know it’s extremely unlikely I’ll even recover to 70% of my old normal.

But I feel like if I try do even less, my life might as well be over. For me personally, I couldn’t live doing less.

I need to get outside, to manage both my autism & my mental health.

I need to find a balance that’s doing enough for me, but not doing too much for my ME, but it’s hard. Such a fine, fine line 🙄

Sigh.

Autism passport: done!!

After, I think, 2 months of constant effort…the autism passport is finally done. Phew.

Now I have another weapon to fight shitty drs & handle medical appts!Excuse me whilst I hide in a dark room for the next week… 😂

This is a local NHS scheme, & the passport actually instructs drs during any hospital visit that they must print out, read, & gang the passport on my bed. Any staff interacting with me are supposed to read it. This should hopefully be an awesome tool at stopping medical staff being dickheads, & limiting trauma.

Autism passport aggro

If I had the energy, I’d be banging my head against the wall rn 😂

So there’s a really cool local NHS scheme where autistic patients get a passport to fill in. This gets logged on your file, you get a copy too, & at hospital appts or visits, staff are asked to print the passport out, read it, & hang it on end of your bed. The passport gives staff crucial information about how your autism effects you (things you like, things you don’t like, sensory issues), & also has blocks to tell them about other health issues you have too.

For me, this will be an extremely helpful safety net, as at every hospital visit I’ve had to deal with abusive or bullying doctors.

Needless to say I want this tool asap, but unfortunately because it’s produced by the NHS & I guess a new scheme, it’s faulty af. I’ve tried filling this beast in eight times now, only for it to fuck up each and every one of them 😂

Text disappearing, icons disappearing, images disappearing, text changing size, images & text boxes overlapping each other. Like, just a ridiculous number of technical issues.

I thought I’d finally got it working today. But nope, nope, so much nope 😂

The sent file looked great. We re-downloaded it to check it was okay, & this is what we got instead!

Uuuugh.

If it worked it would be FANTASTIC. But 🙄

We’ve asked the guy for help for the third time, hopefully he’ll respond & we can get it sorted… 😅

I wasn’t out done asap as when I go see the GP about my hypermobile joints & rheumatoid arthritis, I wasn’t to hand it over to them. It’s been a loooong process 😂